The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

Bassi, Marta; Falautano, Monica; Cilia, Sabina; Goretti, Benedetta; Grobberio, Monica; Pattini, Marianna; Pietrolongo, Erika; Viterbo, Rosa Gemma; Amato, Maria Pia; Benin, Miriam; Martinelli, Vittorio; Montanari, E.; Patti, Francesco; Trojano, María; Fave, Antonella Delle

doi:10.1016/j.jns.2013.11.018

Cited by 41 publications

(38 citation statements)

References 28 publications

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“…These findings suggest that caregivers who are more satisfied have a lower probability to perceive high burden and to be thus exposed to burnout risk. These results were in line with studies conducted with caregivers of people with different diseases (Bassi et al, 2014;Brouwer, Exel, Berg, Bos, & Koopmanschap, 2008;Cohen, Colantonio, & Vernich, 2002;Pickett, Altmaier, & Paulsen, 2007). Moreover, the recent mental health continuum model (Keyes, 2007) provided empirical support to the WHO's definition of health as presence of well-being, showing that wellbeing and ill-being dimensions belong to two different and relatively independent continua, rather than being opposite poles of the same continuum.…”

Section: Discussionsupporting

confidence: 87%

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders

Fianco

Sartori

Negri

et al. 2015

Research in Developmental Disabilities

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Section: Discussionsupporting

confidence: 87%

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders

Fianco

Sartori

Negri

et al. 2015

Research in Developmental Disabilities

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“…The analytical model adopted in our study calls into play coping strategies as mediators in the relationship between these tasks and well‐being. In addition, results suggest that this relationship is not inexorably negative, especially when indicators of well‐being related to optimal functioning are taken into account, as ill‐ and well‐being can coexist within the context of MS (Bassi et al, ; Delle Fave et al, ). In keeping with research on benefit finding (Delle Fave et al, ; Pakenham, , ), psycho‐emotional and social‐practical tasks can positively contribute to well‐being through the use of adaptive coping strategies focused on supportive engagement and positive reframing.…”

Section: Discussionmentioning

confidence: 99%

“…Focus on well-being can provide a more complete view of the caregiving experience, including its positive aspects (Marino et al, 2017;Pakenham, 2007) that may coexist with negative ones (Bassi et al, 2014;Delle Fave et al, 2017).…”

Section: What This Paper Addsmentioning

confidence: 99%

“…Well‐being is instead a complex construct encompassing health‐related assessments such as HRQoL, but also general life evaluations like psychological well‐being (Ryff, ), a concept tapping into optimal functioning and comprising perceived autonomy and mastery, life purposes, self‐acceptance, positive relations and personal growth. Focus on well‐being can provide a more complete view of the caregiving experience, including its positive aspects (Marino et al, ; Pakenham, ) that may coexist with negative ones (Bassi et al, ; Delle Fave et al, ).…”

Section: Introductionmentioning

confidence: 99%

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The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being

Bassi

Cilia²,

Falautano

et al. 2019

Health Soc Care Community

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Informal caregivers play a crucial role in supporting persons with multiple sclerosis (MS), a neurodegenerative disease resulting in progressive worsening of physical and cognitive functioning. While research extensively showed that caregiving workload can be perceived as burdensome, little attention was devoted to the relation connecting workload and caregivers’ well‐being. Building on previous literature on stress and coping, the aim of this study was to test the mediational role of coping between caregivers’ tasks and well‐being. A group of 680 caregivers of persons with MS (M age = 46.45; 51.2% women) was recruited in eight Italian MS centres between June 2015 and December 2016. Caregiving tasks related to basic activities of daily living (ADL), instrumental ADL, psycho‐emotional and social‐practical care were assessed through the Caregiving Tasks in MS Scale; coping strategies (avoidance, criticism and coercion, practical assistance, supportive engagement, positive reframing) were investigated through the Coping with MS Caregiving Inventory; well‐being was evaluated through the Psychological Well‐Being Scales. Analyses substantiated a multi‐mediation model including tasks in basic ADL, psycho‐emotional and social‐practical care, and the coping strategies avoidance, criticism/coercion, supportive engagement, positive reframing. Basic ADL care was negatively related to psychological well‐being through lower use of supportive engagement and positive reframing. By contrast, psycho‐emotional and social‐practical tasks were both negatively and positively related to psychological well‐being, through higher use of avoidance and criticism/coercion as well as supportive engagement and positive reframing. Findings suggest that caregiving tasks are not solely detrimental to well‐being, but they may also provide a positive contribution through the adaptive coping strategies supportive engagement and positive reframing. Findings also highlighted task‐specific areas that could be targeted in intervention in order to effectively lighten burden and promote well‐being among caregivers.

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“…They proposed that an instrument such as the Short Form Health Survey 36 (SF-36; Ware et al, 1993) could be used to assess the carer's overall well-being. The SF-36 has previously been used to assess carers' well-being in other groups, such as carers of those with a brain injury (McPherson et al, 2000), dementia (Argimon et al, 2004), other neurological conditions (Bassi et al, 2014) as well as ED (De Le Rie et al, 2005;Hoyle et al, 2013). This allows for a comparison of the SF-36 data from carers across multiple groups, which has previously been limited (Schulz and Quittner, 1998;Zabala et al, 2009).…”

mentioning

confidence: 99%

Comparing carer wellbeing: implications for eating disorders

Linacre

Heywood-Everett

Sharma

et al. 2015

Mental Health Review Journal

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Purpose -Around 50 per cent of carers of people with eating disorders (EDs) experience mental health difficulties. The purpose of this paper is to investigate well-being of carers of people with ED and carers of people with severe and enduring eating disorders (SEEDs). Design/methodology/approach -Carers (n ¼ 104) were recruited from UK support groups and stratified using duration of the care recipient's ED (0-2, 2-6, W6 years), with the W6 years category classified as SEED. Data were compared with existing carer well-being studies of other patient groups. Findings -Carers of people with SEED were not significantly different on reported well-being to carers of people with ED. However, carers of people with ED reported significantly less well-being than community norms, carers of people with brain injury and of people with dementia. Specifically, poorer social functioning was reported.Research limitations/implications -Further research on carers of people with SEED is warranted as carers of people with SEED were not equally balanced in gender. It would be beneficial if support groups and skill-based workshops were more available for carers. Originality/value -This is the first known study to compare carer well-being of people with SEED with carers of other clinical populations. Further research is required to identify the needs of carers.

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The coexistence of well- and ill-being in persons with multiple sclerosis, their caregivers and health professionals

Cited by 41 publications

References 28 publications

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being

Comparing carer wellbeing: implications for eating disorders

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